https://leader.pubs.asha.org/article.aspx?articleid=2683705Tracking Their Way Back to HealthMonitoring somatic symptoms can help patients with traumatic brain injury identify triggers and find ways to improve their functioning.2018-06-01T00:00:00FeaturesElizabeth Thompson Beckley

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Features | June 01, 2018

Tracking Their Way Back to HealthMonitoring somatic symptoms can help patients with traumatic brain injury identify triggers and find ways to improve their functioning.

It was just supposed to be a simple trip to Walmart to buy socks. But it soon went awry for a young woman who’d experienced a traumatic brain injury (TBI) two months earlier in a car accident.

Though mild, the TBI caused the woman ongoing somatic symptoms that hampered her cognitive recovery. And now the crowded aisles of irritated cart-pushers triggered those symptoms in full. The light was suddenly blinding and the room began spinning. Headache pounding, the woman fled from Walmart, her socks mission unfulfilled.

For speech-language pathologist Katya Bowen, this scenario is all too familiar. Certified by the Academy of Brain Injury Specialists, Bowen has spent 14-plus years treating outpatients with brain injuries. She notes that somatic symptoms can significantly interfere with a patient’s ability to work on their cognitive issues post-TBI. Such somatic symptoms include poor sleep, headache, sensitivity to light and noise, nausea, and dizziness.

Bowen often sees somatic symptoms arise in complex TBI cases and in post-concussion syndrome (PCS)—a set of symptoms that some patients experience for weeks, months or years after a concussion, a mild form of TBI. Symptoms include those mentioned above, as well as fatigue, irritability, anxiety, loss of concentration and memory, ringing in the ears, blurry vision—and sometimes even decreases in taste and smell.

“Every day the brain feels like it’s being machine-gunned with sensory input, and it can’t process it effectively,” says Bowen, who works in acute care at the Berkshire Medical Center in Pittsfield, Massachusetts. “The end result is that the patient is exhausted, emotionally raw, anxious and physically uncomfortable. That then affects cognitive function as well, and it becomes almost like a closed circuit.”

There are, however, some tools that Bowen and other SLPs find help TBI patients manage their somatic symptoms better: These include educating patients about the injury, helping them visualize what it takes to complete tasks, and having them set realistic achievement goals.

By tracking symptoms with a log or writing them in a journal, patients start to learn what aggravates or relieves their symptoms. Later on, symptom monitoring can become a foundation for working on planning and time concepts, Bowen says, and for supporting a return to previous levels of life functioning.

“Every day that brain feels like it’s being machine-gunned with sensory input, and it can’t process it effectively. The end result is that the patient is exhausted, emotionally raw, anxious and physically uncomfortable. That then affects cognitive function as well, and it becomes almost like a closed circuit.”

Why track symptoms?

To date, there is no robust literature on symptom tracking in PCS and TBI—it’s an area ripe for more communication sciences and disorders research, say SLPs working in TBI rehabilitation. But there’s a growing bank of studies on its benefits in the nursing and pain-management literature (see sources below). In the concussion literature, the Sohlberg-Ledbetter study describes benefits of the practice: One patient in the study used symptom tracking to set up a new sleep hygiene routine; another used it to determine when prolonged activity triggered headaches.

Another study in the concussion literature—led by neuropsychologist Stacey Woodrome—also points to symptom-tracking benefits: In it, children with mild TBI reported their somatic symptoms seemed less burdensome when they tracked those symptoms with a focus on identifying solutions and coping with their emotions.

Bowen was introduced to the practice by a neurologist colleague. She finds it can help patients by providing a sense of control in situations in which they feel powerless. Without writing down what happened, “they don’t have as much of an ability to step outside of themselves and ask, ‘What was going on that affected my behavior?’” Bowen says.

Because life can seem so overwhelming after a TBI, Bowen finds it’s helpful to give patients symptom-tracking guideposts. She uses an individualized journaling template that consists of:

A date.

A day.

What the weather was that day.

How much sleep the patient got.

What she ate and when.

How well hydrated she was.

How much caffeine or alcohol she consumed.

What she did that day.

Where she was.

How she felt at the time.

The template also has the patient rate her symptoms on a severity scale similar to a pain scale of 1–10, with 1 indicating the symptom “didn’t bother me” and 10 indicating it was “almost unbearable.” The goal is to make sure the values don’t add up to 10 by the end of the day.

“Journaling teaches them the metacognitive skill to step outside and analyze what the day was like and their reaction to their environment,” Bowen says. “There is always the day or the moment when they say something like, ‘I knew I had to go to the store, and I remembered how loud and busy it is on Saturday afternoon, so I went at 7 on Sunday morning instead, and I did much better.’”

People with brain injuries may start to think of themselves as inept and helpless, Bowen notes, which can spiral down into feelings of depression and hopelessness. By recording specific circumstances in an objective way, patients can figure out what stimuli affect them—and how to work around those to maximize their functioning.

“When I start making [patients] look at just the data, and take the emotional terms out of it, it puts their hands back on the steering wheel,” Bowen says. “My primary goal is to help them be able to manage the symptoms better, to cope with them and work around them.”

Also, as indicated in the Woodrome study, journaling appears to help some patients feel reduced effects of somatic symptoms, perhaps making the brain more available for cognitive work—an area for possible research exploration, notes Bowen.

“Journaling teaches patients the metacognitive skill to step outside and analyze what the day was like and their reaction to their environment.”

Role of the SLP

TBI is caused by an impact or jolt to the head that disrupts the normal functioning of the brain, and can range in severity from mild to severe. Nearly 2.8 million people suffered TBI-related emergency-department visits and hospital admissions in 2013, with TBI contributing to the deaths of about 50,000 of those people, according to the U.S. Centers for Disease Control and Prevention.

Survivors of TBI can face effects lasting a few days or a lifetime, and anywhere in between. Those effects can include impairments of speech, thinking, memory, movement, vision, hearing and emotional functioning (such as personality changes and depression). See ASHA’s Practice Portal on TBI in adults for a full listing of TBI symptoms and sequelae.

Typically, a patient with a TBI is referred to an SLP by the primary care physician or neurologist, explains Mary Ann Williams-Butler, a supervisor at the Emerson Hospital Center for Rehabilitative and Sports Therapy. (Patients with TBIs are also commonly referred to occupational therapists, physical therapists and mental health counselors, who, along with the SLP, provide treatment as part of an interprofessional team.) The SLP’s initial evaluation starts with a lengthy intake with the patient and family, says Williams-Butler, who is also a supervisor at the Dr. Robert C. Cantu Concussion Center in Concord, Massachusetts.

The SLP will ask, for example, about the extent of the injury, medical interventions received to date, current symptoms, previous brain injuries, and other medical diagnoses prior to the brain injury. The SLP also learns about the patient’s home situation, including educational or vocational status, favorite activities, and goals and expectations for treatment.

Next, the SLP administers more formal diagnostic batteries, though Williams-Butler approaches the use of tests with caution. Quick screenings aren’t sensitive enough to pick up more subtle linguistic or cognitive deficits, she says, and relying on a traditional language assessment such as the Boston Diagnostic Aphasia Examination (BDAE) will miss more complex deficits. Possible cognitive tests to use include the Woodcock-Johnson IV Test of Cognitive Abilities, Functional Assessment of Verbal Reasoning and Executive Strategies (FAVRES), Behavioural Assessment of the Dysexecutive Syndrome (BADS), Test of Everyday Attention (TEA), and Test of Memory and Language (TOMAL).

Also in Seminars in Speech and Language, the same authors reviewed nonstandardized assessment procedures and concluded: “When the primary goals of assessment are to identify real-world disability and plan and monitor intervention, office-bound language and neuropsychological testing must be supplemented by nonstandardized, functional assessment procedures.”

Some experts believe post-concussion symptoms stem from structural damage to the brain and/or nervous system, while others attribute the symptoms to emotional factors (many PCS symptoms overlap with those of depression, anxiety and post-traumatic stress disorder). The symptoms could involve an interplay between the physical and the emotional (see chapter 19 of the 2016 book “Translational Research in Traumatic Brain Injury”). And the stress on a TBI survivor only heightens if their professional identity or family role changes, Williams-Butler notes. Pre-existing psychological issues such as depression, anxiety or attention deficit hyperactivity disorder can also complicate recovery.

When post-concussion symptoms interfere with daily functioning, Williams-Butler’s team at the Cantu Concussion Center asks patients to track those symptoms as part of their therapeutic program. The goal is to increase patients’ awareness of when symptoms start to escalate and to stay at a “sub-threshold level.”

“A lot of times, people will try to push through pain,” Williams-Butler notes. “With concussion, that actually slows recovery.”

“For patients with brain injury, they’re missing the ability to do pre-simulation of a plan. If you don’t pre-simulate, you walk into a room and see a shiny object, or go to the closet and stare. Ten minutes can go by. That’s a long time in the morning, and now you’re off track.”

Miming and tracking

One of the hallmarks of TBI is impairment of executive functioning skills—abilities to plan, organize and monitor, notes SLP Sarah Ward, a specialist in brain injury assessment and rehabilitation at Cognitive Connections in Concord, Massachusetts.

“For patients with brain injury, they’re missing the ability to do pre-simulation of a plan,” says Ward. “If you don’t pre-simulate, you walk into a room and see a shiny object, or go to the closet and stare. Ten minutes can go by. That’s a long time in the morning, and now you’re off track.”

In her practice, Ward teaches the patient to be a “mind mime.” This means doing a dress rehearsal of what’s to come by including four elements of future thinking that make up the acronym MIME:

M. Make an image of the future space. What will it look like?

I. What will I look like doing it? Self-project and see yourself in that space.

M. Mentally time travel. How am I moving to achieve this?

E. Future emotion. How do I feel in that space?

A caveat, however, is that people with TBI may struggle to use past experience to fill in gaps and anticipate a novel future. They may not be able to rely on memory to guide future thinking and may be unaware of how a task’s cognitive and emotional demands could affect their performance, Ward points out.

To help patients manage, Ward advises them to use mind miming (or pre-simulating), combined with journaling: tracking their symptoms and environmental triggers for those symptoms. These practices help patients realize the need to balance, or “break and pace,” the number and type of tasks they’re doing. As a result, they’re less likely to take on too many cognitively, emotionally or physically demanding tasks that lead to a crash of symptoms and a longer recovery, Ward finds. (Bowen says the quantitative symptom-tracking template she uses was inspired by Ward’s work).

“We try to prevent the crash,” Ward says. “One aspect we spend quite a lot of time on is helping individuals in a quantitative way determine their cognitive load so they don’t overload themselves.”

It is far better to do a little less, and every day take on a little more, and slowly build to recovery, she continues. Patients appreciate it when SLPs and other professionals can outline this for them, she says. It’s not enough to simply lay out a schedule or to-do list without mentally simulating the day, Ward says. Instead, she teaches clients to use mental imagery to guide their list of daily actions.

She also teaches them to use the journaling/symptom tracking piece to review factors that affected their performance on a given day. She urges them to use that knowledge to prevent symptom flares from recurring. For example, how do you know it’s better to fill up on gas before picking up your son at 5 p.m.? Because yesterday you learned that traffic becomes unmanageably stressful after 5.

Once patients get a better hold on their symptoms through tracking, they can focus on building stamina—tolerating increasing amounts of bright light or noise, for example, or concentrating for incrementally longer periods.

Writing versus tracking

The other type of journaling we typically associate with that word—writing down thoughts and feelings—can also can be helpful in TBI recovery, says Williams-Butler. It can aid emotional resilience and recall and help patients make sense of changes. Many patients with TBI also experience grief and depression after their injury and need behavioral counseling or a support group to learn additional coping techniques, notes Williams-Butler.

Bowen points out that occupational therapists also provide key help with symptom management and return to work and school—she emphasizes the importance of a team approach to treating TBI. It benefits patients’ outcomes when rehabilitation professionals reinforce one another’s efforts to help them manage their symptoms and modify their behavior, Bowen notes.

Once patients get a better hold on their symptoms through tracking, they can focus on building stamina—tolerating increasing amounts of bright light or noise, for example, or concentrating for incrementally longer periods, says Williams-Butler.

“We provide education and strategies they can use at home to start to manipulate their environment and slowly build endurance,” she explains.

Learning to Live With a Changed Brain

It happened right after public-school educator Stacia Bissell was beginning a new quasi-administrative position as an academic coach after 20 years as a middle school math teacher. She hit her head in a bicycle accident on September 2, 2011. Although she did not lose consciousness, Bissell did lose about 18 hours to post-concussion amnesia, forgetting that day at work, the 10-mile bike ride, the accident and the trip to the hospital.

A CAT scan showed a slight brain bleed, but doctors released Bissell and simply told her husband to watch her for a few days. Talking on the phone the next day, an astute friend could tell she wasn’t herself and suggested getting an appointment with a specialist. The neurologist informed Bissell that she would not be returning to her new job any time soon.

“I didn’t understand. I thought everyone was lying to me,” Bissell recalls. “I wasn’t in my body, I couldn’t feel temperatures and would wear shorts and a tank top in late fall. I was a gourmet cook who couldn’t make pancakes or a grilled cheese sandwich, and I didn’t know why. Hours would go by, and I didn’t know what I had done. I had a note to call the doctor, but it took me weeks to understand that meant I had to take action.”

About three months after her injury, Bissell’s neurologist referred her to speech-language pathologist Katya Bowen of Berkshire Medical Center in Pittsfield, Massachusetts, for help managing her symptoms and getting back on task.

Bissell says she saw Bowen for 30 to 40 appointments in four months, during which “she had to teach me how to do everything again.” For example, Bissell had let her house cleaning go because it was just too overwhelming. Bowen gave her strategies to stay on task, such as writing on sticky notes what she wanted to accomplish in each room. Bissell put a broom or chair in the doorway, a physical reminder to ignore distractions. She would set a timer every 10 or 15 minutes.

“The reason for the chair was to make sure I didn’t leave the room, because I would wander. That timer was to get me to have insight about what I was doing and what I needed to bring myself back,” Bissell says. “So many times I found myself playing solitaire on my phone and not sure how I got there. Why wasn’t I vacuuming, or dusting, or organizing or whatever?

“What Bowen was teaching me was to accomplish something in total, even if it took eight times longer. She was rewiring me so I would have success, and do it in faster time, and be less apt to get distracted.”

The notes Bissell took on Bowen’s techniques led to her start writing down her story. The process was an important way for her to begin understanding and accepting what had happened to her and how her TBI had changed her, says Bissell, who is now a support group leader and a spokesperson with the Brain Injury Association of Massachusetts.

“I visualize my old self in a tightly sealed glass box I carry around on my shoulder. My old me,” Bissell relates in an article for HOPE After Brain Injury magazine. “I can see her, but I can’t access her. I don’t act like her or talk like her. I go to do things I think I’ll do like her, and it comes out all wrong. I think the moment my helmet hit the pavement that day, I climbed into that glass box, and the person I am now started breathing.It was like I was born.”